Ellie was a trooper for her bone marrow test this morning. She was nervous going in to it, and awoke feeling sore and dis-oriented. But Ellie was up and working with the hospital's teacher within 20 minutes or so.
Before we left the hospital, I had a talk with Ellie's oncologist. He showed me the results of yesterday's MIBG scan. Unfortunately, the test revealed that there are a number of "hot spots" showing Neuroblastoma in Ellie's bones (left shoulder, left hip, legs, one of her shins, and probably spine, ribs and pelvis). The CT scan showed no evidence of active tumors in any of the soft tissue - the old tumor in her head, or her abdomen. It appears that all of the active cancer is coming from the bone marrow. So even though we do not yet have the results from the bone marrow biopsies and aspirates, or the urine test (which shows the levels of NB in her body), we can expect that they will show positive.
I must admit that, while I wasn't really surprised, I took the news much harder than I expected. Somehow, just seeing the evidence right before my eyes was a pretty heavy blow. I did ask what treatment they would offer Ellie, and he said that there is heavy chemo (which John and I don't feel Ellie can handle), light chemo (which has some side effects that would be hard for her and may or may not make a dent in the cancer), and radiation to the specific sites. While he did not say it in so many words, my impression was that these treatments would be primarily to buy Ellie some time. I couldn't talk much in the moment, and told the doctor that John and I would discuss things and get back to him. The hardest part came when I had to go back to Mom and Ellie in the waiting room. I briefly told Mom, but started to get choked up, so I had to get away before Ellie saw me. Mom was wonderful - she held together and managed to take Ellie to get lunch and give me time to call John and Loretta. Talking on the phone completely undid me. Trying to deal with this over the phone with John was unbearable. He was at a gas station somewhere near Wyoming, and we each took turns crying. There was something so awful about not having our arms around each other in that moment.
This is what it all boils down to: there is no cure for Neuroblastoma. It is an aggressive, difficult cancer - with a very low long-term success rate. Sometimes the conventional treatments work, but many times they don't. Going forward with chemo (from this point) and having Ellie survive more than a few pain-filled years would take a miracle. Surviving this cancer with treatment by Homeopathy would take a miracle as well. (There is one possibility in the Homeopathic arena: sometimes in cancer treatment, it is possible for new tumors to show up while the patient is steadily seeming to get better. In a case such as that, the patient gets a little worse before getting better. It is by no means a guarantee, but it does give us some reason for hope.) This afternoon, through our tears, both John and I talked about how we want Ellie to experience as much joy and comfort as possible in living no matter how short her life may be. And if that life is short, then we want her to die at home in our arms instead of in an ICU somewhere. We did not make any final decisions or grand statements... we were just talking. But we were on the same page.
So after quite a long time on the phone, I was composed enough to go back up to the room and face Ellie. Now Ellie is only nine years old, but she's a pretty complex little girl. She doesn't miss a thing. And on those rare occasions when I am able to get something past her, she manages to still feel my emotions underneath the surface, and that is the most unnerving thing of all for her. I have learned to always talk to her with complete honesty, but to take her lead with how much she can handle. Ellie always shows me when to stop, or when to proceed. It is a fine line to walk, but it has always stood me in good stead. This is how the conversation went (to the best of my memory)...
Me: Come here a minute, I want us to have a little talk.
Ellie: Is this going to be a lecture?
Me: No! Where did you hear that from?
Me: You didn't do anything. I just wanted to tell you about my talk with the doctor. Your MIBG scan showed that there are some places in your bones that have cancer in them again. (We have always been careful to tell her that there was still cancer in her bone marrow that we were trying to fight. We never told her that it was gone completely.)
Ellie began to cry and hugged me close while she sobbed.
Me: What are you thinking?
Ellie: I DON'T WANT MORE CHEMO!!!
Me: We don't want you to have to do more either. Daddy and I are still talking about what is best to do for you, and we do want to know what you want. But we don't want you to think that this is up to you to have to decide all by yourself. The doctor also said that we can do radiation on some of the places.
Ellie: (wailing) I DON'T WANT RADIATION.
Me: We don't want you to have to do that either. I'm not saying that you have to do it. I'm just telling you what we can do to try to help the cancer stop growing.
Ellie: I don't want to go away.
Me: Do you mean die?
Ellie: (crying) Yes.
Me: We don't want you to die either. You need to know that this cancer is very hard to treat. It's tricky and can be difficult to make go away. Sometimes chemo works well and it goes away. Sometimes kids have to get 14 rounds of chemo (and you only had 6!) and it finally goes away, but then sometimes it comes right back. There is no way to know. And it's possible that Homeopathy won't work either. We just don't know. But Daddy and La and I still want to do Homeopathy and good nutrition and we want to fight if you do. Do you still want to fight that way?
Ellie: Yes! I WANT TO GO HOME!!
Me: What are you thinking?
Ellie: (crying and hugging me) I'm scared
Me: Of dying?
Me: (crying a little) The good thing about Homeopathy is that if it doesn't cure your cancer, it will help you die peacefully - not like being in the ICU with all of the tubes and wires. It can really help things to be easier and calm.
Ellie: I want to call La. Does she know?
Me: Yes - I talked to both La and Daddy on the phone this afternoon.
Ellie: Does Grandma know?
Me: Yes. I told her. La is waiting and can get on the web cam with us if you want.
So we got on the web cam and told Loretta about our conversation. And then we talked about how she can spend each day making the most of living. She can play and laugh and do school. Everyone should live each day like they don't have more time. People tend to either think that they have all the time in the world, or live in constant fear that something bad will happen. We just never know what tomorrow will bring, but we should live each day to it's fullest. Then Ellie began laughing and playing with La. The joy and peace that radiated off of her was palpable.
And so, while I said earlier that we have not reached a firm decision, you can see where we are headed. While Ellie is too young to make this decision for herself all by herself, this is about her. I believe that as parents, we are entrusted with our children - to make the best decisions that we possibly can for them - not born of fear or selfishness. I see such parents here every day. The paths they have chosen differ greatly, but there is not one whose courage I don't admire. They consistently demonstrate selfless love, whether it comes in the form of persisting with every conventional treatment known to man, walking away from certain treatments, keeping their whole family together, or living separated from spouses and children. I have been talking with a number of parents as well as the social worker here at the hospital. This disease is not a straight-forward kind of cancer that has a standard cure - one thing that works for most patients. Each and every person with NB seems to have something unique unto themsleves. And each family is faced with making the decisions that are best for them. There are no easy answers, and what is right for one is not always right for another. I have been thinking about that a lot today. I think that it is so easy to fall into the trap of thinking that our decisions are only "right" if they work out the way that we want. I have become more and more convinced that we often make right decisions that have unexpected outcomes. And that doesn't make them wrong. We cannot see the end from the beginning. We can only walk in humility before God, listening to His voice, and stepping out... often blindly.
I cannot promise you what our future will look like. But for now we are going home... to be together as a family... to live. And tonight John's heart is broken because he has missed the past two-and-a-half months of Ellie's life. Please pray for us. I wish that there was some way for John to be able to stay home for a time and spend some good quality time with Ellie.
The next three weeks will be busy as we prepare a place to live. Loretta lives in half of a small building on Mike and Reni's property. We had decided to temporarily move Loretta into the guest room of the big house and take her room, and then wait until spring to fill in the other half of the building - next to our room - for her. But in light of the new developments, we hope to find a way to get it all done. Should things with Ellie take a turn for the worse, we will need Loretta closer in the middle of the night. We would also like to free up the guest room for family and friends who come for visits.
Tonight I will leave you with the everlastingly wise words of my adorable daughter. She was watching a TV commercial for some cereal - Coco Puffs, I think. She rolled her eyes and drily commented "that's just death on a stick!"